Ten years and one month ago, Bangalore resident LW* passed away from kidney failure at the age of 42. His wasn’t an ordinary case.

In his twenties, an active football player with a local club and an outgoing person, he became increasingly odd over time. At first, he stopped hanging out with his friends, didn’t seem to care about his appearance any longer, would wear the same clothes for extended periods of time and even stopped bathing completely at one point.

He lived with his family – his parents and a younger brother – and in a neighbourhood where he knew everyone but rarely spoke to any of them. When he was engaged with in conversation, it always veered towards something conspiratorial or persecutory. Towards the end of a year, he began to write illegibly on the walls and was often seen talking to himself, or in the midst of animated conversation with people who were not there. He’d suddenly enter a room and demand that everyone be silent even if they weren’t speaking.

At the point that it escalated towards violent outbursts – throwing objects across the room, threatening fights and so on – the family on the advice of friends decided to take LW to see a private psychiatrist.

At the exam, LW was found to have persecutory delusions, auditory hallucinations and other negative symptoms that had lasted for at least a year. He was found to be a high-functioning person that went through a major decline in day-to-day skills. All of these symptoms fit with a diagnosis of schizophrenia, and he was put on medication. The private psychiatrist would make bi-monthly home visits, which didn’t always go smoothly. His mother – his primary caregiver – remembers that “sometimes, he would lock himself in his room and refuse to see the doctor [psychiatrist] and then, I would have to describe his state of mind or his behaviour to him.” She hasn’t saved any of his medical prescriptions, but remembers that it was altered over time, and most definitely increased. “For the first several years, it was only half pills of most of the medication but then it became one and then even two. We also felt that he was calmer on his medicines, so we didn’t want them to stop,” she recalls.

After nearly two decades on medication, two years before his passing, it was noted that LW had developed chronic kidney disease, a gradual slowing down of the kidneys’ functions over time. Towards the end of his life, he developed leg swelling, feeling tired, drastic loss of appetite and weight, and general air of confusion. The recommended medical solution was dialysis.

“While we knew the medical solution, it was very difficult to provide him this procedure,” his mother tells TNM. “General hospitals in the city were paranoid about admitting a schizophrenic patient with a history of violence, and mental health institutions didn’t have the facilities,” she points out.

Eventually, the family footed the bill of the dialysis machine and a nurse and tried to make his final days easier at their home.

“My son’s needs were neglected by the medical system and we were made to run from pillar-to-post. Also, we came to understand that his kidney troubles were a result of the antipsychotics that he’d been prescribed by his psychiatrist,” she adds.

LW’s mother is right in this regard but it wasn’t the antipsychotics that resulted in the chronic kidney disease, but rather, the side-effect of the medication, which is diabetes, that could lead to renal failure. A 2015 Study conducted on Taiwan’s National Health Insurance Research Database suggested that schizophrenia is associated with 25% increase of developing chronic kidney disease within a three-year period of medication.

Dr Sabina Rao, consultant psychiatrist with Columbia Asia Hospital, agrees that antipsychotic medication can have physical health side-effects though she says the answer is “much more complicated.”

Physical complications of antipsychotic medication

“The understanding about schizophrenia (and even other mental illness) is abysmally low,” Dr Sabina says. “More than two-third of the population doesn’t even know what it means, they don’t understand that it isn’t curable but chronic, and that one might still be able to function,” she explains.

Another problem in accessing care with regard to mental health is the ‘treatment gap’, according to Dr Sabina. “Accepting that one has mental illness and the time before one seeks help is at least eight to ten years. Then the diagnosis, and then the treatment, which the patient must adhere to for an extended period to see any results,” she says.

Specifically in cases of schizophrenia, she informs us of known cases of lithium poisoning, and patients having toxicity for years without even knowing. In order to prevent these occurrences, there are protocol checks required on a yearly or three-year basis. “Though renal failure in the cases of schizophrenia patients occurs because of the second-generation antipsychotics causing diabetes, which in turn causes the kidneys to gradual stop functioning in the patient,” she explains.

Psychiatrists and mental health professionals have become watchful of these side-effects over the past several years, but Dr Sabina agrees that more needs to be done to prevent such cases.

“Schizophrenia is a thought disorder and therefore the patient can’t be considered responsible, and needs to be closely monitored. We need stop-gaps like care managers or case workers, who will track the well-being and response to medication of each of the patients,” she suggests.

‘But things are changing’

In her response to the case of LW, Dr Sabina tells TNM, “I can see such cases could have occurred and might even happen today because hospitals are hyper-paranoid about unstable cases. And in the case of the patients and their families, there’s also lack of public awareness around the possibilities of accessing treatment in these instances. But things are changing. Like, Victoria Hospital in Bangalore does have the facilities to address the physical health ailments of persons with mental illnesses,” she says.

“It is true,” echoes Dr Divya Nallur, a psychiatrist, addiction specialist and medical director of the Yelahanka-based People Tree Maarga. “The medical set-up is changing to acknowledge, address and accommodate the physical health concerns of patients with chronic mental illnesses,” she says.

Though, Dr Divya also tells TNM of the fears of general hospitals with regards to certain mental illness cases. “It wouldn’t have been too difficult for a mental health hospital to bring in a dialysis unit, though, there are numerous risks involved. Medics do sometimes panic around the severely ill. Certain chemicals are needed for dialysis, and there could be fear of consumption by any of the other patients, or even strangulation risk for the patient undergoing the dialysis,” she explains.

“It is easier to address mental health concerns in a fully-functioning medical unit than the other way around,” she adds.

Mainstream hospitals across the city and the country have a consulting psychiatrist or at least someone on call, Dr Divya adds as examples of the change. “There are hospitals like Cytecare Cancer Hospitals that offer support services like psycho oncology, and others have even staffed themselves with psychiatric nurses that have been trained to deal with aggression and other psychotic symptoms,” she adds.

The lack of public awareness about these facilities might be the issue too, she points out. She gives a recent example from her own practice, of the growing fluidity between general and mental health hospitals. “One of my patients’ platelets dropped suddenly, and they need urgent care. It was logistically easier for them to go to another hospital, so all I had to do was ring up the on-call psychiatrist, transfer the patient’s file and it was sorted out,” she tells TNM.

When depression has to be translated as ‘stress’ due to stigma

While the medical profession and hospital care system might have pulled their socks up in the past decade, there’s still much to be done because of the stigma surrounding mental illness in this country. In her own practice, Dr Divya has seen patients that want their leave letters to say different things.

“It is heartening that people, especially in the city of Bengaluru, are looking towards mental health professionals, but there are still negative notions around mental health. Most patients don’t want ‘depression’ written on their leave letters, they’d rather have something vague like ‘stress’ noted there instead,” she says.

“Families still enquire if sessions will be confidential, because they fear that this will ruin their wards’ marriage opportunities, but this is just a small percentage – those who actually come to medical establishments rather than going to temples and swamis for fixes,” she adds.

And that’s where organisations like the Bangalore-based White Swan Foundation for Mental Health come into play, their singular purpose being to create public awareness around mental health issues through well-researched information.

“We’re always hearing that people need to make informed decisions around mental health and its care. Yes, sure, get educated, but where’s the material?” asks Manoj Chandran, the CEO of the Foundation. “Our aim is to create the knowledge pool for the general public in order to break the cycle of misinformation. We spread this information through our community outreach programmes, that work with anganwadis, schools, the youth, and corporate workplaces, to help people access the right knowledge about mental health issues,” he explains.

He doesn’t know of cases that are similar to that of LW, but hazards that these incidents are likely because integrated healthcare is missing – not just in India but in even in most developed countries.

“According to the National Mental Health Survey, 2015-16, 85% people will never seek professional help for their mental health issues. So, we’ve got to recognise that each of us is a stakeholder in this conversation because if the stigma reduces, then more people will go to a mental health professional,” he hopes.

‘Not enough psychiatrists’

While awareness is the first hurdle, the next might be the preparedness of the field of psychiatry itself. According to Dr Divya, she found herself in psychiatry – it wasn’t something that was intended. “I mean, during medical rotation, we spent a total of seven days on the subject,” she says.

Dr Sabina echoes the sentiment and adds, “With only 3500-5000 psychiatrists in the country, and no facility focussed on psychiatric nursing even now, it becomes a matter of economics and would take major government initiative. Though that might be long coming, with even health funding being so dismal (only 1% of the GDP),” she tells TNM.

“And this is just looking at the cities in the country. During my three years at NIMHANS, we did outreach camps in rural areas around Karnataka for a few days every month. And on seeing these cases, I always wonder, where were these people going otherwise?” Dr Sabina adds.

We’re assured by Rashi Vidyasagar, the communications manager at White Swan Foundation for Mental Health that things are beginning to look up. “The science of psychiatry has developed leaps and bounds over the past decade. Technology and science have come together to help and improve timely diagnosis. And the more information people have the more they can help themselves or those around them access the care that they need,” she says.

In all our interviews, it was near impossible to track down a case similar to LW and the mental health practitioners assured TNM that the conversation around mental health issues has turned from a mumble into a murmur, and that the healthcare system, too, is changing for the better. And while it is still a financially expensive undertaking to tackle mental health issues, practitioners are seeing that these resources are becoming more accessible to the general public at least in cities.

“I just hope that other people with mental illnesses don’t slip between the cracks in the way that my son did,” LW’s mother says.